Many Tourette sufferers live with a positive outlook on life. But as someone with Tourette, I can safely say it is not very enjoyable. Tourette often co-exists alongside other conditions.
I have had tics my whole life. But because I don’t swear, many people aren’t aware it is Tourette Syndrome.
Because of the swearing stereotype, TS has made many appearances in comedy sketches.
Although some tics can be humorous, living with them daily is pretty exhausting.
- Tics being used in jokes and comedy sketches
- Keeping my TS secret because of the stereotypes
- How tics make me feel
Most people have only seen the swearing side to TS
Swearing is only true for 10% of sufferers. It has its own name, Coprolalia.
This is the most well known symptom of Tourette Syndrome, mainly due to the shock value. For a bystander, I can see why this would raise a few eyebrows.
It is no surprise Tourette Syndrome has made it onto the biggest stage of all, on shows such as South Park.
But for a real life sufferer of Coprolalia, shouting swear words can be extremely embarrassing and even dangerous. Many of these vocal tics involve saying the last thing you would want to say out loud.
And then there’s the strain on the voice and throat. For those with very intense vocal tics, these can be very loud, very frequent and pretty painful.
My tics were embarrassing as a kid
One of my tics was to bite my knee. I would have to stop walking with my friend, get down and bite it.
As a ten year old it was confusing and often met with laughs from people watching. I still cringe looking back as much as I did at the time.
If I was to do this for comedy purposes, it would be funny. But because the reason is an intense build up of pressure inside, I can only get relief by doing it.
Tics as an adult are no more enjoyable
It sometimes takes me three or four hours to fall asleep with tics. I have a head-nodding tic the moment my head hits the pillow and it is the most annoying thing ever.
Going to work after a lack of sleep is common but isn’t healthy. Nor does it put me in a good mood.
And on the London Underground… everyone here knows the ‘don’t look someone in the eye and stay quiet‘ rule. This of course drives my eye tics crazy and I am the most fidgety person in the carriage.
I have always been very self conscious of my tics, and although they may look funny, they are just tiring, achey and embarrassing.
There are many other conditions TS sufferers have to deal with
Over at Tourettes-Action, the organization highlights many of these co-occuring conditions. Apparantley, 85% of TS sufferers will experience co-existing features and conditions!
These include ADHD, OCD, ASD (Autism Spectrum Disorder), anxiety, depression and sleep problems.
OCD is such a problem for me personally that I have dedicated half of this website to it.
ADHD was also something I was diagnosed with as a child, and has made many aspects of life difficult even into adulthood.
For many, tics are just the tip of the iceberg. Many other factrors make life more of a challenge.
Increased awareness will help with understanding
As more sufferers talk about their experiences, there will be a better understanding of tics and how they work.
I do believe one reason for a lack of Tourette Syndrome support is the misconceptions around the neurological disorder.
If more people realized how much sufferers have to endure, there would be more urgency to fund research and treatments.
And because of how common TS is in the general population, a lot of people will see an increase in their quality of life.